Work begins to develop UK clinical guidelines for PANS and PANDAS
Work begins to develop UK clinical guidelines for PANS and PANDAS
Friday 19th April 2024 marked the inaugural meeting of the PANS PANDAS Clinical Guidelines Development Group, held in central London.
With 30 attendees, including clinicians from all relevant fields of medicine and representatives from the patient community, the formation of this group represents a significant step forward in developing better healthcare for people with PANS and PANDAS across the UK.
We are heartened by the high level of engagement in this important process and feel that it reflects an acknowledgement that much more needs to be done by the NHS to improve the lives of children, young people and adults living with these conditions.
The purpose of this multidisciplinary group is to reach a consensus on how these conditions should be managed. The guidelines will be developed in conjunction with the Royal College of Paediatrics and Child Health and will look to improve care for those affected whilst work continues to develop research.
During this first meeting the group reviewed the existing literature and international peer-reviewed guidelines and discussed what process needs to be followed in order to produce robust guidelines which will be widely implemented. Attendees considered what people living with PANS and PANDAS want to see from the guidelines and heard testimony from the patient community. Co-production will be central throughout the guideline development process.
It is likely that the process will take at least twelve months to complete and will involve consultation with a wide group of experienced clinicians and patient and parent representatives from across the UK. We are acutely aware that, for all those currently battling to access appropriate healthcare and support for PANS and PANDAS, these guidelines cannot come quickly enough. We urge all clinicians not to delay treatment until the guidelines are published and in the meantime signpost them to the PANS PANDAS Steering Group statement which recommends referring to existing, international peer-reviewed guidelines.
If you have any comments or additional questions about the guidelines, please get in touch with us at feedback@panspandasuk.org.
Further Questions
Why are these clinical guidelines rather than NICE guidelines?
National Institute for Health and Care Excellence (
Many conditions, and particularly conditions considered to be predominantly paediatric, lack sufficient research to qualify for
Why does the process of developing guidelines take so long?
Clinical guidelines are sets of recommendations based on systematic research methods. Producing these requires advanced research skills and project management.
In order to ensure that guidelines are robust, and taken seriously by healthcare professionals, there are a number of steps which must be followed. These include:
- Identification and recruitment of stakeholders
- Drafting and consulting on a draft scope
- Development of a search strategy
- Delphi process (What is a Delphi process?)
- Formulation and prioritisation of recommendations
- Drafting and consulting on a draft guideline
- Amending and finalising the guideline in response to stakeholder comments
- Development of complementary educational materials
- Publication and dissemination
What difference will the publication of these guidelines make?
Currently, there are no formally accepted UK guidelines for PANS and PANDAS. This means that there is a lack of clarity regarding how to diagnose, treat and manage the conditions. This has led to huge variation in the care made available to people presenting with symptoms of PANS and PANDAS across the UK.
These guidelines will standardise the care that should be available to this group of patients. They will be widely disseminated, which will raise awareness of the conditions and how to treat them.
Who are the guidelines for?
These guidelines will be written for all healthcare professionals in primary, secondary and tertiary care settings. They will be relevant to all settings where health or social care is provided or commissioned, including health services related to education and occupational health.
What should I tell my doctor about the guidelines?
We strongly encourage all health professionals with an interest in PANS and PANDAS to sign up to receive our quarterly PANS Physicians’ Network bulletin which will keep them updated with progress on the guideline development process.
Any clinicians with an interest in taking part in the development of these guidelines can find out more by e-mailing katy.hindson@panspandasuk.org.
